In one specific way, Dana Lewis is a cyborg. To cope with her Type 1 diabetes, the health researcher wears what she calls an Artificial Pancreas System, or APS, a sort of DIY external organ. Clipped to her hip, it consists of an insulin pump reverse-engineered so as to be able to communicate wirelessly with a small computer and radio stick. Every five minutes, the computer monitors her glucose levels then adjusts the pump accordingly, automating what has always been a human labor. Blood sugar levels can be affected by everything from stress to diet to jet-lag but the APS takes all of this into account with the sober calculating of, well, a computer. For diabetes sufferers, the device is a godsend. Lewis is its inventor.

Today, Lewis is the leader of what she calls the open source APS movement. Hundreds of people, she says, build and use an APS across the globe. Every year she counts more and much of the growth can be attributed to her evangelizing. Extremely active on social media–“a prolific Tweeter”–Lewis is constantly singing the praises of her APS experience. Her Twitter account is chock full of pictures and anecdotes; Lewis meeting up with other APS users; Lewis getting through airport security scot-free with her APS attached (“#havepancreaswilltravel”).

Lewis is, undoubtedly, totally committed to the DIY cause. With a grant from the Robert Wood Johnson Foundation, she works from her home in Seattle communicating with other APS users, all of them trying to figure out how to perfect and proliferate the device. There are around 1.25 million Americans affected by Type 1 diabetes but Lewis has nothing less than the world’s whole population of sufferers in her sights. With such a bold vision, we reached out to hear more about her plans.

Dana Lewis standing in a field of tulips.

First off, why is the APS such a game changer?

In type 1 diabetes, what a person has to do is constantly be aware of not only their blood sugar but a lot of other factors about what they’re eating and the timing of their insulin [intake]. It’s a lot to keep track of. You have to do it 24/7, 365 days a year for the rest of your life after you’re diagnosed. What’s great about the artificial pancreas system is instead of having a human be burdened with staying on top of every single number and projection–that’s what a computer is perfect for. It can do the math every five minutes. It doesn’t get tired or emotional or worn out. It’s able to crunch the numbers and do the decision making automatically, no matter what the human is doing. It removes a lot of the cognitive burden and often achieves better outcomes than what people can do by themselves.

What is looping?

Looping is what we use to describe the act of using the system. It’s technically known as a hybrid closed loop but we call it an artificial pancreas. Looping is the act of closing the loop between the pump and the CGM.

How did your own experience with diabetes lead to this innovation?

I’ve had type 1 diabetes since my freshman year of high school, almost 15 years now. The APS actually started with one particular problem that I wanted to solve around making my continuous glucose monitor (CGM) louder. That’s the device that measures your blood sugar every five minutes. It’s supposed to alarm you when your blood sugar is too high or too low. But I would sleep through the alarm. It’s actually very dangerous. My frustration was around wanting to get the data off of that particular alarm in order to make a louder alarm using my phone. Once we were able to achieve that, we were able to build algorithms that led us into building the artificial pancreas. It’s funny because that wasn’t the original goal of the project. The goal was to wake me up. But now I have a device that lets me sleep and automatically takes care of everything for me.

A look at an artificial pancreas system.

Who is ‘we’?

This is an open source community project with a lot of people. Primarily it was myself and my now husband, Scott, who was my co-design and development partner throughout this entire project. When we first met in 2013 his first question about my insulin pump was, ‘Why doesn’t it talk to your CGM?’ I said, ‘They’re different manufacturers–of course they won’t talk to each other.’ But it wasn’t until six months later that we found somebody through Twitter who had solved the problem of getting data off of CGM that then allowed Scott and I to build all of these subsequent systems. Social media really brings people with ideas together to be able to collaborate on tools like this. This might not have happened had we not had social media to connect people. We did our first louder alarm system in 2013. A year later, December 2014, we had closed the loop and built the artificial pancreas. Today, over 500 people worldwide use an APS.

Why do you consider this a movement?

It’s definitely a movement. We use the hashtag #WeAreNotWaiting. People say, ‘Why do you do this?’ It’s the fact that we are going to wait years for a commercial solution that may or may not fit our needs. Why wait when we have off the shelf consumer grade hardware that actually allows us to do this?

Are there commercials products available now?

I’m not satisfied with stopping just because there’s one thing available for a few people in one country. That’s not good enough.

There is one commercial solution that’s now available in the US. It’s very very expensive. But it’s important to realize that this is a global issue. So I’m not satisfied with stopping just because there’s one thing available for a few people in one country. That’s not good enough. We really need technology that’s available in every country. There’s a big role for the diabetes community to play in terms of educating people. If you can’t afford or access a commercial option because you can’t get insurance approval or it’s not available in your country that doesn’t mean that you have to suffer in the meantime. You do have a choice to go and try something DIY.

How are you spreading the word about this?

We have a website that links to the open source codenames and documentation. People also share frequently across social media. They blog, tweet, give talks, post videos, talk about it on Facebook. It’s really word of mouth that connects the community with one another. That’s important because it’s DIY. People have to build it themselves. There’s nobody to give them the thing because we’re not a company. We can’t do that legally. People often run into questions when they’re building it. But that’s the great thing of having a whole community because you have dozens if not hundreds of people who can help answer questions about what’s happened–if this happens on this type of computer or I have a question on how the algorithm works. So it’s a really 100% open-source effort in terms of not just the code but also the kind of help people give.

Just because an artificial pancreas is homemade doesn’t mean it can’t come with cute accessories.

Is an APS difficult to make?

There’s a perception that it is. But we actually have dozens of people who come in with no technical experience and they’re able to get it up and running in about an hour. It’s not impossible but the big barrier is people being willing to try. What’s surprisingly funny is there’s some people who come in with a lot of technical expertise and they start getting bogged down in the weeds and try to fine tune it after building it, without building it successfully first. So they’re slower to build the system than people with no technical background.

The big barrier is people being willing to try.

Once people get them going, how does the APS impact people’s lives?

For me it’s peace of mind. Others, like parents, who have a constant worry about their children and wake up several times a night to take care of their children talk about how great it is being able to sleep again. For other people it’s about having to do less work for diabetes. The amount of work it takes is so much less with this technology. Also the blood sugar itself. It’s easier to reach your goal of blood sugar and stay there with an APS.

What are you working on right now?

We are continuing to evolve both the algorithm and the hardware that we’re using. I’ve been looping now for over three years. The hardware has changed. Our biggest challenge is time. It’s a 100% volunteer project. When something comes up it’s based on us carving out the time to do it and being self-motivated. No one’s paying us. We do get a surprising amount done but more hands makes for lighter work. It’s always nice to have more volunteers join the community.

What are the demographics of the community?

We have people all over the world. Brazil, UK, Spain, Russia, Bulgaria, China, Australia. People on five continents looping. The language barrier might be bigger than the technical barrier. But Google Translate has made a big difference.

What are your long term goals?

One of the challenges right now in the US is there’s only one kind of pump which is loopable. These are old pumps which have technically been recalled because of a quote unquote security flaw. Somebody found the ability to remote-control it. The FDA told the company to recall it. But that same kind of flaw is what actually allowed them to remotely communicate with our computers, which is actually ideal. So those of us who are looping have decided that the benefits of looping outweigh the minimal risks of somebody trying to do something malicious.

These pumps are not brand new. You can’t buy them in warranty. You run the risk of your pump breaking and having to buy another one on a secondhand market. There are other pumps available from manufacturers elsewhere around the world that have bluetooth built in, modern pumps without security flaws. We’re working with pump manufacturers to have them bring a modern pump to market in the US and elsewhere around the world where we don’t have to rely on the security flaw and can actually use an in-warranty modern pump. We’re trying to facilitate the use of open protocols, so instead of having to hack the communication and do a lot of reverse engineering work we’d much rather have a clearly documented communication protocol that the user can safely and securely use. A big push of our community’s work is pushing those companies to bring these to market. We shouldn’t have to reverse engineer medical devices.

Happy Holidays! Folks is taking a break until January 2nd. In the meantime, enjoy this story from our archives. Originally published on November 16, it is one of our favorite pieces from 2017.

It’s 2:14 in the morning and a high-pitched beeping is coming out of an iPhone next to my bed. I groggily stand up, trudge upstairs, and save my son’s life again.

My son Henry has type 1 diabetes. It’s an incurable autoimmune condition that, if managed well, won’t have a significant impact on his quality of life. But managing it well presents its own challenges for my wife and I.

Henry Jensen.

The thing with diabetes is that there are two dangers. If his blood sugar goes high, it’s not an immediate threat. Too much of that will cause his eyes to fail and his organs to shut down, but we catch that kind of thing pretty quickly and he’s very responsive to insulin. But if it goes low– and keeps falling–it can result in him falling into a coma and dying. When he goes low, he typically loses 50% of his brain functionality, meaning that he’s not always capable of treating it himself.

It happens all the time. And his sugar can drop really fast. We’ve been out swimming or hiking and he’s plummeted from the mid-80s to the mid-40s in ten minutes. Once he was at school and he dropped so precipitously that he wasn’t coherent enough to take sugar by mouth. The staff had to give him the Glucagon, an injection of sugar that will rapidly spike his blood glucose back up to safe levels. That’s a big needle, a scary needle, and it goes right into the muscle.

So we have a device called a continuous glucose monitor, a little needle implanted in his arm, attached to a Bluetooth transmitter that broadcasts his blood sugar level to his iPhone, and then into the cloud to our iPhones. It’s a wonder of technology, something that would have been unthinkable a generation ago.

Instead of having to take a needle, prick his finger, and siphon blood into a glucose meter every time we need to look inside his body and find out his sugar, we can now see it whenever we want. He’s also wired up with an insulin pump, a small device in his stomach or back that we replace and move every three days, so when we need to bring his sugar down it’s simply a matter of conveniently pressing a few buttons as opposed to prepping a syringe, measuring a pull of insulin, finding a site and giving him an injection.

Things are tremendously better for him than they were for diabetics 20 years ago. But that doesn’t make them necessarily better for me. The downside of having all this information at my fingertips is that I’m constantly on edge, an information junkie for my son’s survival.

The downside of having all this information at my fingertips is that I’m constantly on edge, an information junkie for my son’s survival.

Some nights his alarm goes off every two hours, each time asking for more insulin or more glucose to stabilize his sugar one way or another. Some nights his alarm never goes off at all. Even then, I find myself waking up anyways, usually at 2:30 in the morning, and reaching over for his phone in a panic. Did the battery die? Is he OK? He is. He always is. But I still check.

And then there are the nights his alarm goes off, and goes off again, and again, and again. On a particularly bad night I can be up every hour or two to give him a sip from a juice box to raise his sugar, or a unit of insulin to bring it back down. And then I have to get back in bed and try to get back to sleep with the lingering adrenaline from being woken by the alarm still coursing through my system.

It’s exhausting to have Type 1 Diabetes, but it can sometimes be even worse for the parents.

Let’s be clear: it’s not just me doing this. My wife handles an equal share of the responsibilities for his care. Even with two of us, though, it’s a lot. And it’s wearing us down.

Doctors call it “caregiver fatigue.” It’s when you push yourself to the limit every day contending with the needs of your loved one with an illness and it results in problems for your own health.

Common symptoms of caregiver fatigue include irritability, inability to concentrate, appetite issues and vulnerability to sickness. I can only speak for myself, but after a string of rough diabetes days, I can be a miserable person to be around.

After a string of rough diabetes days, I can be a miserable person to be around.

For me, the biggest issue is sleep. There’s plenty of science that shows that cognitive abilities start to decline when you get less than 7 hours of uninterrupted sleep a night. I can only think of a handful of nights I’ve done that in the last four years. I am fully aware that I’m not operating at 100% capacity, and it affects every other part of my life, from my relationship with my wife to my exercise and diet. I don’t have energy to play with my kids, and I start feeling resentful of their very existence. It’s no good for anyone.

Caregiving is a 24 hour job. And I already have a job. You can’t take a smoke break or slack off at your desk playing Minesweeper when your kid’s life is on the line.

It all came to a head earlier this summer, when my wife left for a week on a business trip. Everything fell apart – Henry got hand foot & mouth disease at a party (please don’t bring your kids to parties when they’re sick) and it made his blood sugar extra volatile as it covered his extremities with blisters. I should have dropped his carb intake, but I didn’t have the time or energy to cook so we did one pizza night too many. Every night was awful, and every day was full of too many things to do. I took great care of my kids, but at the same time I was stretched to my limit. And then I broke.

I wound up spending a week in a mental hospital, dealing with issues that went beyond caregiver fatigue but my exhaustion definitely exacerbated. I was put on an antidepressant and met with some doctors to learn new coping mechanisms. And most importantly, I was forced to admit that I can’t keep doing this without help.

And then I came back to my family.

You can’t take a smoke break or slack off at your desk playing Minesweeper when your kid’s life is on the line.

The biggest issue with type 1 diabetes – and really most chronic illnesses – is that you can’t control them. You can only manage them, and that takes constant effort. And my only real job on this planet is making sure that my children grow up as happy and healthy as humanly possible.

The Jensen family.

Every day is a new challenge to navigate, to learn how to take care of myself as well as I take care of my children. But it’s the same challenge that every parent out there is dealing with. I just have a few additional layers of stress on top of it.

There’s no magic bullet for caregiver fatigue, no medication that will make you care just enough and no more. Just like my son has to learn to listen to his blood sugar and feel if he’s low or high, I need to listen to my joints ache and my head buzz and know that I need to rest. And just like I help my son, my family can help me. One of the best ways for me to manage that stress is to put my work down and sit and play LEGOs with him, or read comics. To let myself experience his childhood unencumbered with him.

I’m going to be caring for Henry until he’s 18, and probably longer. What makes it worth it is knowing that he’s also caring for me. Thinking of him, and my wife, and my daughter while I was in the hospital made me realize that I need their strength as much as they need mine, and together we can do things for each other – and the world – that we could never do alone.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.

“Learning how to care for a diabetic is like a part time job,” says Julie Seabury. Except it’s one that starts at dawn.

Everyday, Julie starts the day on alert. As soon as they wake up, her daughter Maddy, 10, and son Jake, 14, check their blood levels and tell her the results. “I want to know what we’re starting at,” Julie explains, equating it with a quick glance at the fuel gauge before you rev up the car.

Julie Seabury

Then comes the math. The kids make their own lunches, writing the estimated carb count for every item they pack. Their breakfast depends on their blood count, but never includes carbohydrates, which might cause their levels to spike. But eggs and bacon are usually on the menu, as well as carefully measured glasses of juice, if their morning blood sugar levels are low.

Next, the drive to school. Maddy and Jake’s teachers are prepped on what to do ‘in case of an emergency’, but Julie still needs to double check that the administration knows the signs of high and low blood sugar, and that the nurses have backup meds on hand in case of emergency. Once she’s confident the kids can get through the day, she drives off to her full-time job, also as a teacher at a nearby school, but even then, she’s always got one eye on an app that connects to Maddy and Jake’s blood monitoring systems so she can check on them throughout the day.

Night is the scariest time.

When you have type 1 diabetes, there’s a phenomenon called “Dead in Bed” syndrome, in which low-blood sugar can result in a person with diabetes slipping into a coma and dying. Julie’s nights are filled with surges of fear that, if she doesn’t check on them regularly, either Maddy or Jake will succumb to the syndrome.

So every night, Julie sets two alarms: one at 1am, then another at 4am. When they go off, she slips into her children’s rooms as quietly as she can, to check their blood levels. Sometimes, when she checks, her kids’ glucose levels will be off the charts, seemingly for no reason. Then, she and her husband are up six or more times per night, bringing her children juice and making sure they’re okay.

The Seabury Kids. Maddy, front, and Jake, right, both have Type 1 Diabetes.

Before June 2014, Julie couldn’t even imagine having to worry about such things. That was the month that Julie’s youngest daughter was diagnosed with Type 1 Diabetes.

Maddy, then 7 years old, had recently begun losing weight. Normally bright and energetic, she became lethargic and sickly. Already managing celiac, Maddy was more susceptible to other autoimmune diseases, so Julie and her husband took their youngest daughter to the hospital. What followed was a whirlwind 24 hours in intensive care, followed by a three-day crash course in which Julie–a total stranger to the world of diabetes–had to learn all of the (seeming) calculus needed to keep her T1D daughter healthy.

“There really is a learning curve,” Julie remembers. “It’s not a simple math.” Luckily, Maddy was diagnosed in summer, months Julie has off from work. During this time, she perfected her technique: checking blood glucose levels with a finger prick, injecting insulin, and counting carbs to keep Maddy stable.

It was good she had the practice. Six months later, her oldest child, Jake, was also diagnosed. This time, she knew just what to do, but while it was easier in some ways, “it was also harder, because I knew what [type 1] meant,” says Julie. “I knew what it meant for our family.”

A glimpse inside Maddy’s bag reveals lots of diabetes supplies.

Three years later, Julie and her family have adjusted to the drastic lifestyle change that comes with having two of their three children diagnosed with T1D. Now, Maddy and Jake are “pretty darn independent. “ They test their own blood, count their own carbs, change their infusion sets for their insulin pumps and know their bodies well enough to be aware of their needs when they are exercising, eating lunch, or having highs and lows in their blood glucose levels.

With all these struggles, parents that have children with T1D need support. That’s why a significant portion of Julie’s spare time is devoted to reading messages from other Type 1 parents online, through blogs or Facebook groups. Julie doesn’t often post herself, but “just seeing other people putting themselves out there” helps her, she says. “I can read that and know that I’m not alone – other people are out there crying their eyes out too.”

One day, Julie posted on her own Facebook page: “Today, being a pancreas is kicking my butt.” Both Maddy and Jake’s CGM devices broke, expensive pieces of equipment which provide Julie with important mobile alerts about their blood sugar levels. The bad luck highlighted another underemphasized fact about being a caregiver for someone with Type 1 Diabetes: the constant expense. All of this equipment costs money, and even with insurance, it puts sizable financial stress on the family.

“It’s just constant. If I really think about the fact that we will never get a break from this, it becomes disheartening. It’s always there.” The challenge of the Type 1 parent is achieving balance between the constant worries and responsibilities of keeping a child healthy, and not letting Type 1 get in the way of a life well-lived, for everyone affected by it.

The challenge of the Type 1 parent is achieving balance… and not letting Type 1 get in the way of a life well-lived.

Through all this, Julie takes strength from her children.

Last year, for a project interpreting Martin Luther King Jr’s ‘I Have A Dream’ speech, Maddy focused on her dream for a cure of diabetes. “She researched how many people are affected by diabetes, and taught her class about it” Julie remembers. “She explained how finding a cure would change things for her when she is playing sports, or having a sleepover at a friend’s house.”

That’s a dream Julie, too, shares. She can only imagine how her life would change if a cure to Type 1 Diabetes is found: the money it would save, the gray hairs it would prevent, the nightmares it would stave away. But that’s not to say Julie Seabury resents being a human pancreas. Far from it: there’s just nothing she wouldn’t do for her kids.

Amanda Oberski has a really cute pug named Apollo. He’s the kind of calm dog that reflects well on his owner, cuddling up to everyone who needs it. Amanda holds Apollo in her arms a lot, where he calmly sits observing the world from the comfort of her bosom. She lets him off the leash but he doesn’t stray far. He walks around, sniffing trees, bigger dogs, and dark spots on the sidewalk. He’s easy going and curious, just like his owner.

Apollo hasn’t seen Amanda for ten weeks. The 4,200 mile bike ride that Amanda just completed isn’t exactly the sort of thing you can take a pug on. But Apollo was waiting for her at the finish line.

When Amanda saw Beyond Type 1’s open call for cyclists with Type 1 diabetes to bike across the country, her immediate reaction was anger. “I really thought there was no way someone with Type 1, let alone a team of people, could bike across the country.” She thought it was crazy and dangerous.

Then she had a change of heart. “I sat on those thoughts for a few days and let them swirl around inside of me,” she says. “If my initial reactions were fear and anger, and I think I’m a very adventurous and bold person, that was a big flag for me.. And I realized some were my own limiting thoughts and that if this was going to happen, if a team was going to do it, I needed to be part of that team.”

Amanda and her pug, Apollo. Photo: Whitney Freedman

There are a fair few mountains in between New York and San Francisco, the path that the Bike Beyond team took on their mission to raise awareness for Type 1 diabetes. With no cycling experience, Amanda was nervous about those mountains; she imagined accidentally losing control of her bike and plummeting off the side of one. So she started training, using San Francisco’s hills as proxy. (In the end, “biking up mountains is not that fun,” she says. “But biking down them is great–and yes, a little scary.”)

Amanda grew up far from any mountains in Sterling Heights, a suburb of Detroit. She was diagnosed with Type 1 when she was 15. Before she was diagnosed, she’d been sick for months, but being an active teenager–she danced three to four hours a day as a member of her high school dance team–had mostly hidden her telltale symptoms.

What finally gave it away was the peeing. Amanda got up one too many times in the middle of the night, and her mother got worried. They went to the doctor, but both Oberskis thought it was just a bladder infection. “I was there for like thirty seconds. I peed in a cup, they looked at it, and sent me to the hospital,” she remembers. Her blood sugar levels were dangerously high.

The diagnosis was a relief. “I’ve always been very realistic and very positive. I was just happy that we knew what it was, and that there were next steps to take care of it.” She was sick of the extreme sleepiness, hunger, and thirst that untreated Type 1 diabetes can cause… not to mention the constant calling of nature.

Amanda Oberski’s positivity and curiosity about Type 1 is what propelled her across the country.

Amanda embraced her diagnosis. Some things were difficult, like going out to eat when she wasn’t sure where the carbs were hiding in any given dish. Also, as a high school girl, she liked cute little bags, which is right out with Type 1, given the number of supplies you need to carry with you. For the most part though, Amanda dodged the Type 1 burnout which is common after diagnosis, once the relentless attention required to manage the diseases starts waring people out.

Her positivity has been an asset in managing her diabetes. “When you have Type 1,” she says, “You have to roll with the punches because you can plan your day a certain way and then it will totally go up in flames and you have to be able to say ‘Well, ok!’ and restrategize. Because it’s literally your life on the line.” She says that being curious about diabetes helps her with her adaptability. “I love to figure stuff out. My diabetes was actually interesting to me.”

These days, Amanda tries to instill her curiosity in others. After finishing a Teach for America program in Washington DC, she stayed with the organization working with schools in the district on bettering their science curricula. Four years ago, Amanda and Apollo moved to San Francisco together where Amanda began working to help build a K-12 Engineering and Design school called Bright Works.

“A lot of the way that K-12 is run suppresses curiosity,” she says. “We just give kids facts instead of them exploring on their own volition. But learning is not black and white. I think curiosity is the strongest and best ability that we have as humans and that is what we should be developing and propelling forward.”

Curiosity about the limits of her diabetes is what propelled her across the country on a 4,200 bike ride. So maybe Amanda’s got a point. Apollo certainly thinks so.

Abigail Pepper, 18, is still working out what she wants to do with her life. But whatever she choses, it’s clear she’ll do a lot. In fact, she already has.

She just started college at Appalachian State University as a junior, having already put two years of community college under her belt. There, she’s pursuing a master’s in political science. “With all of today’s political insanity, I’d like to be able to contribute instead of just saying ‘oh this is terrible!’ For example, there’s a lot of horrible healthcare legislation for people that depend on insulin. I don’t know exactly what I will do, but I think there’s space for me to help there.”

Having Type 1 diabetes herself, having access to insulin is an issue close to Abby’s heart. A volunteer with the Juvenile Diabetes Research Fund in her hometown of Charlotte, North Carolina, Abby helped organize a gala that raised over a million dollars.

But her greatest personal achievement might just be successfully completing Bike Beyond, a 4,200-mile bike ride from New York to San Francisco. She was so proud of the accomplishment, Abby and her mom Cheryl, who homeschooled her while working night shifts as a critical care nurse, got matching tattoos after the ride. It’s a design of a mountain above crossing arrows with stars in the sky that map all of the stops they took along along the way. They were raising money and awareness for Type 1 Diabetes with nineteen teammates, through an organization called Beyond Type 1.

Photo: Whitney Freedman

At 17, when the ride started, Abby was the youngest rider, so her mom accompanied her. A cycling enthusiast herself, Cheryl has been Abby’s companion on her journey with diabetes since the beginning.

It started with the Turkey Trot, a five mile Thanksgiving morning run that Abby’s family participates in every year. When she was 13, quite suddenly, Abby threw up in the middle of the run. She remembers thinking, “Oh my gosh, I’m so cool! I ran so hard I threw up! I’m a real athlete!” But in reality, she was dying; at her blood sugar level, she could have gone into a coma from exercising.

Abby had been displaying symptoms of Type 1 diabetes for years, but as is all too common, doctors kept misdiagnosing it as a flu. After the Turkey Trot incident, Cheryl who had correctly suspected Type 1, refused to leave the doctor’s office until they tested Abby’s blood sugar. When they tested it, “the nurse’s eyes popped out of her head and she went running out the door.”

Abby was rushed to the hospital, but the reality of her diagnosis didn’t hit her immediately. “I just didn’t realize how insane diabetes is at first,” she says. But after six months, the full time job of keeping track of her blood sugar and insulin levels, the permanence of her condition started to sink in: “It was exhausting,” she remembers. “I was trying to be a pancreas, while I was still learning how to be a human.” She sank into a depression: “My mom says I changed. She says my face stopped lighting up.”

“I was trying to be a pancreas, while I was still learning how to be a human.”

Cheryl finally decided to take Abby to a conference for women with Type 1. “I thought it sounded terrible!” Abby remembers laughing, “A diabetes conference? Who wants to go to that?” But the experience ended up cheering her up substantially. She made friends there who she still sees and talks to regularly. Making friends that knew first-hand what she was going through was “life-changing.”

Photo: Whitney Freedman

But it wasn’t quite enough. Abby still struggled with depression. She took up running which helped but “there’s no break from diabetes,” she says. “I can go on vacation, but I’m still going to be watching my blood sugars go up and down all the time and trying to keep them at a certain level which is a lot of pressure and can sometimes be impossible.” So competitive that she sweats during board games, Abby didn’t like she couldn’t always win with diabetes.

Last year, unable to beat her depression herself, she finally asked her mom to take her to a therapist. Now, Abby’s an ask-for-help crusader: “I’m so passionate about how OK it is to be sad and have weaknesses and about how important it is to ask for help!”

In other words, acknowledging your human weaknesses makes you stronger than denying them. That’s a message Abby and the 20 other Bike Beyond riders exemplify in the flesh. “Type 1s are pretty strong-willed and self-confident because we always have to advocate for ourselves,” she says. “Type 1s have a don’t-give-up attitude because we already live with something that you can’t give up on.”

When he crosses the finish line after a two-month, 4,200-mile bike ride across America, Jesse Lavine collapses into the arms of his family and friends. Sobbing and laughing, it’s hard to tell where the one begins and the other ends.

As part of Beyond Type 1’s Bike Beyond, a cross-country ride from New York to San Francisco to raise awareness about Type 1 Diabetes, Jesse and his teammates have just completed a ride some never thought they could make.

Jesse’s got the personality of everyone’s favorite camp counselor. He’s sweet, appropriate, and warm, but there’s something mischievous about his smile, like he’s about to play a prank on you. A goofball, he was literally donning a fake felt moustache when I caught up with him in San Francisco.

Jesse Lavine has biked from New York to San Francisco to raise awareness of type 1 diabetes. Photo: Whitney Freedman

Even with such a silly accessory, it was hard not to be impressed by Jesse: the 22-year-old has no nothing to hide, no shame, not a trace of social anxiety or reservation. He knows it’s a power he can use to help keep others buoyant, and he does: at one part during the ride, when his teammates’ spirits were at the lowest, he shaved off half his beard and kept it that way for days, just to keep his friends laughing.

It took a while, though, for Jesse to be emotionally ready to take this trip. For years, he wanted to have as little with diabetes and Type 1 diabetes community as possible… let alone raise awareness of the condition.

The Reluctant Diabetic

Diagnosed with type 1 at age 11, Jesse says he’s always wanted to have as normal a life as [he] could.” He went to a diabetes summer camp the year he was diagnosed, but immediately hated it. Part of that was because of his expectations on what summer camp should be like. At his particular diabetes camp, there were no pine cabins and no outdoor showers. It was “kind of resort-y,” Jesse says. “I had been to other camps before that and knew what it was like and I wanted to rough it.”

His experience at diabetes camp made Jesse not one to be involved with other Type 1s. “I wanted to feel normal by doing the things that my friends without diabetes were doing.” So Jesse did as much as possible to push his diabetes to the background of his life. That’s how Jesse lived for the next nine years. “ I just wanted my diabetes to play as small a role in my life as possible.”

I just wanted my diabetes to play as small a role in my life as possible.”

As he would learn, ignoring your diabetes is easier said than done. During an 11 mile hike through the Big Sur mountains his first year of college, he fell into a toxic state of ketoacidosis. In other words, his body had too much glucose, but since his cells have no way to access it as fuel, they start feeding off fat. He made it out alive, but it shook him up.

Still, Jesse continued shunning other Type 1s, and pushing his condition to the background of his life, until his sophomore year at college. Attending Los Angeles’ Pitzer College, Jesse was unhappy. “My body didn’t feel good. I was scared to eat a lot of food because I didn’t know what it would do to my blood sugar,” he remembers. Depressed and socially isolated, he walked into the registrar one day and withdrew himself mid-semester for a medical leave of absence.

When he got home, he got a new endocrinologist who got him on a continuous glucose monitoring system so that he could track his blood sugar all of the time and understand what the instant effect insulin had on his body. He enrolled in a class at Boston University and stayed with family friends he refers to as “two awesome rabbis with five kids in a giant pink house.”

Jesse at the finish line of Bike Beyond. Photo: Whitney Freedman

Embracing Type 1

It was during this period that he also met Steve Richert, the director of Project 365, in which Richert climbed rocks every day for a year to prove that you can do anything with Type 1 diabetes. Meeting Richert was revelatory to Jesse. Before, he’d viewed his diabetes as weakness, but Richert made Jesse realize that he could, instead, “optimize diabetes” to live life to its fullest.

Soon, Jesse was interning at T1D Exchange, which runs an online community for people with Type 1 called Glu. It was while there that Jesse finally made his peace with having Type 1. “It was the first time since that camp that I worked with other people with type 1,” he says. “They get what you’re going through and also you get to see that people have a lot of different ways of going about it.”

Living with type 1 diabetes for nine years, Jesse realized he had the expertise to help people. Although he’d struggled embracing his own experience, Jesse started outreach work at some diabetes summer camps. Except now, he saw the situation more clearly than he had as an 11-year-old.

“It’s going to be ok! Look at me, I’m ok!”

“Other families were going through what my family went through,” Jesse says. “The fear and the worry that the kids wouldn’t amount to anything. It was so gratifying to get to say, ‘hey! It’s going to be ok! Look at me, I’m ok!’”

Returning to Pitzer, Jesse came out of his summer with a new passion to learn. He changed his major to human biology. He wanted to learn the science of the condition that he’d had for the last 10 years. “I already knew the feelings of it,” he says. “But to sit at the table with scientists and people that can actually change these things… it was awesome!”

Actually, he said “it was awesome!” three times. You know someone is excited about something when they pull a verbal hat trick.

It took ten years for Jesse to accept his diabetes, but now, he inspires everyone around him that you can do anything with type 1. Photo: Whitney Freedman

Jesse The Catalyst

“Jesse is a catalyst,” says his friend Will Deheeger. “Wherever he goes he’s always getting things started and connecting people in the right ways to make productive things happen.”

That’s just what he did back at school. Through connections he made while in Boston, Jesse brought the College Diabetes Network to the Claremont Colleges, a consortium made up of 5 undergraduate colleges and 2 graduate schools. He also started writing content for Beyond Type 1, where he learned for the first time about their cross-country ride to raise awareness for diabetes, Bike Beyond.

Initially, Jesse didn’t know if he could complete the ride: unrelated to diabetes, sciatica pains had kept him in agony through much of his first semester of senior year. After an operation for a herniated disc, though, Jesse knew he had to try.

“I healed for two months then I worked my ass off to train and get ready for this ride.” He was also simultaneously working on his senior thesis, and performing research for Dexcom, the company that makes the meter he wears to track his blood sugar.

“Yeah,” he laughs. “That last semester was really hard.”

It’s true. You can do anything with type 1.

That’s an understatement. Not many people can bike 4,200 miles. Let alone with diabetes. Let alone just months after recovering from surgery. And that’s not even to mention his half-beard. But like his role model, Steve Richert, Jesse’s trying to prove a point.

With the Bike Beyond ride behind him, Jesse shows no signs of slowing down. Case in point: he’s currently putting together a diabetes app for kids. Similar to a Tamagotchi, Jesse’s app treats diabetes like a pet, which you have to feed and take care of, lest its blood sugar get too high or low. Jesse hopes the app will teach kids to get a grip on the mental math involved in constantly considering food, exercise, and insulin.

How does he have time to do all this? Jesse coyly admits he spent a lot of time working on his pitch deck for the app during his bike ride.

Family vlogging has changed the way the world parents, and no one better shows how than the Dale Tribe. The Dales–Amy, Jon, and kids Anna, Eli, Shae and Aspen– have enjoyed a groundswell of popularity since they started uploading little pieces of their lives to YouTube in 2013. Today, they have almost 100,000 subscribers… a platform the Dales use to try to raise awareness for type 1 diabetes.

No one in the Dale family had grand aspirations of YouTube fame when they started posting their family videos online. For Amy, in fact, the decision to upload videos of her kids to YouTube was purely practical. She laughs: “I thought ‘I suck at scrapbooking, maybe this is a way to keep my family memories.'”

Amy’s first videos are endearingly primitive: the first one’s even shot with a vertical iPhone camera. As they go on, though, she gets better and better at putting them together, showing the individual personalities of each of her kids in a charming and comforting way. Anna’s artwork, Eli’s freerunning, Shae’s love of acting: they all get equal space to express themselves.

The Dale Family.

The love between family members is obvious in these clips. The Dales aren’t doing anything special–carving pumpkins, going camping–but there’s already something compelling there. Unlike other YouTubers, the family seems really present and in the moment. They’re not performing, just living, and in an era of hyper-calculated social media, it’s refreshing.

Although Jon was supportive of what Amy was doing on YouTube, he was a little too standoffish. “My initial reaction was ‘this is fine for you to do, just so long as I don’t have to be too involved,” he remembers. Complicating matters was his career in social media strategy for big brands. “I wasn’t sure being goofy with my family was good for my personal brand,” he says. “A couple of years in I sort of saw that vlogs were having a positive influence and I decided to become more supportive and get involved.”

“It was a real difference after he got involved,” Amy says. “Before it was me on my iPhone and it was… not awesome.”

A candid moment with the kids.

Jon brought a little professionalism to the project, making the editing tighter and the narratives a little clearer. The honesty and authenticity was still there, it was just easier to digest.

The turning point for the family came with the diagnosis of their daughter Aspen with type 1 diabetes in January of 2016. She had been feeling sick and losing weight, and the family brought her in for some tests. Amy filmed the day, taking the kids to the mall and BuildABear Workshop while they waited for Aspen’s blood tests to come in.

After the tests, an ambulance came to pick up Aspen and hooked her up to an IV drip for insulin to bring her elevated blood sugar down. It’s a tough watch, but the little girl takes it like a champ. They learn about all of the parts of managing diabetes – checking blood sugar, injecting insulin, learning the signs of highs and lows – and we watch them do it.

The family didn’t upload a video that week, until Aspen came home.

“(Working on the video) was almost therapeutic to me,” Jon says. “It was my birthday when she was diagnosed and we went to the ER that night. It was 4 days later that we got back home. I sat down the next day, we had this footage and I almost in a daze sat down and edited that episode. We had this whole world of people that were trying to understand what had just happened to us, and I thought if we put a vlog up, I don’t have to have this same conversation with fifty different people about what type 1 is.”

As the father of a type 1 diabetic myself, that video brings me back with whiplash speed to my son’s diagnosis: the feeling of panic and confusion as you learn that your lives will never be the same. Amy’s emotions in the moment are hard for me to watch, but the honesty with which she reacts to it is really inspiring. The Dales’ video struck a chord, and Aspen’s diagnosis became their second most popular video to date.

When your kid is first diagnosed, you’re left totally adrift. But the interesting thing about type 1 diabetes is that there’s a powerful community around the world reaching out to support each other. My son Henry didn’t start making videos to help other kids until two or three years after his diagnosis, but having Aspen’s very first moments captured on video is incredibly powerful for other kids experiencing that panic and confusion. She’s a strong kid, and her strength can help other people.

Since the diagnosis, Aspen’s diabetes has become just another part of the Tribe’s life. The family has incorporated blood sugar checks, insulin doses, pump changes and the like as just another part of their daily routine, showing the world that living with type 1 is just another sort of normalcy.

The diabetes community is a powerful one…

It’s expanded their world in multiple ways. The diabetes community is a powerful one, with families and friends supporting each other through the ups and downs of the disease. The success of Aspen’s diagnosis video bolstered their channel, massively increasing their subscriber numbers. Her diabetes is treated with the honesty and openness that they bring to all of their videos, and while it’s a major part of the family’s life it’s not the sole focus.

In a world that’s becoming increasingly concerned about the ethics of YouTube parenting, uploading your children’s most intimate moments for all the world to see can be a controversial decision. In particular, the recent drama with a Maryland family who had children removed after abusive prank videos they’d been making came to light has painted family vlogging in a pretty bad light.

But the Dales have a strict policy of what makes their YouTube channel a safe space, both for their children and the people who visit them. “We basically have the approach that any time our kids don’t want to be included in anything they don’t have to give a reason why, they just say ‘Hey, we don’t want this filmed.’” Jon says. “For any reason they can ask at any time, or ask during post if there’s something. And we know it works, because the kids will exercise that. Whether our son feels like he has a zit or our daughter has a bad hair day, we don’t push back. It’s not a negotiation.”

Yet bad hair days aside, one thing Aspen has continued to be comfortable sharing with the world is details of her Type 1 diagnosis. Diabetes isn’t the goal of the channel–the Dales say the only real goal is to show the world how they get along, because they believe it’s “good for people to see how a healthy family operates”–but it’s not something Aspen is afraid to show the world.

The end of Aspen’s diagnosis video has her facing the camera with Jon. “We’re excited about this new journey, and Aspen has been super, super brave, haven’t you?”

She nods. The video ends, and another day begins.

https://folks.pillpack.com/wp-content/uploads/2017/07/dale-3.jpg589883K. Thor Jensenhttps://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.pngK. Thor Jensen2017-07-03 10:00:152017-07-07 08:34:35Parenting In Public With Love And Lots Of Insulin

Imagine you’re on a long-haul flight, from, say, LA to New York. It’s very important that the airplane doesn’t fly too high, or you’ll get altitude sickness, or too low and risk a crash. But you only get to check your instruments a limited number of times, and you’ve got to keep everything on an even keel for the whole flight.

That’s what having Type 1 diabetes is like, according to Scott Hanselman. He wrote The Airplane Analogy, a useful metaphor which explains how diabetics manage their blood sugar levels.

“Food raises blood sugar – altitude. Insulin lowers it. Non-diabetics don’t have to think about altitude, as you all have a working pancreas (autopilot) and don’t sweat altitude,” says Scott. “Diabetics, on the other hand, have to constantly wonder if they are at a safe altitude. Staying at a consistently high altitude – high blood sugar – will eventually make you sick; while a low altitude – low blood sugar – will kill you quickly.”

Scott Hanselman has been trying to hack his diabetes through tech since he was 21.

Scott was diagnosed with diabetes at 21, and has been using technology to “hack” his health ever since.

“That’s the first thing every techie does once they’ve been diagnosed with diabetes,” says Scott. “They try to solve the problem with software or hardware.”

Scott says that that “problem” equates to a billion-dollar industry. But no one’s solved it just yet.

In addition to his day job is as a community manager for Microsoft, Scott records three weekly podcasts, runs a blog that’s been going for thirteen years, travels to conferences around the world, spends time with his young family – and looks at ways to manage his health through tech.

“I have been trying to use tech to solve my diabetes for 20 years.”

“I have been trying to use tech to solve my diabetes for 20 years,” says Scott. “Back in 2001 I did a “poor person’s connected sugar meter” experiment that I wrote up. This is before mobile internet really went mainstream – so I’ve been thinking about this a lot and for a long time.”

GlucoPilot was an early diabetes app written by Hanselman for the Palm V.

That experiment took place after Scott developed GlucoPilot, a diabetes management system for the PalmPilot that allowed diabetics to log their blood sugar levels, insulin, and carbohydrates, and view reports based on the data.

Scott went on a cross-country trip – the “experiment” – using GlucoPilot in conjunction with an insulin pump and a blood sugar meter to keep track of his health as he traversed timezones. The technology was useful, but it still required exporting, uploading, and moving data between three devices, which Scott described as a tediously manual process.

In a more recent blog post that reflects his reasons for writing GlucoPilot, he said “Diabetes sucks deeply, the technology we are given to manage it sucks deeply, and we are pretty much tired of waiting.”

GlucoPilot gained tens of thousands of users, in four languages, and Scott sold the technology. Unfortunately, it’s now out of date, but “the ideas behind it – how to remotely and mobile manage blood sugar – live on in hundreds of apps, and open source projects like Nightscout.

“Diabetes sucks deeply, the technology we are given to manage it sucks deeply, and we are pretty much tired of waiting.”

“These are timeless problems that any diabetic engineer will try and solve,” says Scott.

For the past seven months, he’s been testing out an “artificial pancreas;” a way of using technology that he calls “body hacking.” It involves being physically tethered to three medical devices 24 hours a day.

“The Open Source Artificial Pancreas is like a “Cruise Control” for diabetes. It automatically keeps you in the lane, generally, similar to a Tesla. It won’t bolus for you or know you’ve eaten, but if you fall asleep (for example) it will quietly try to get you back to that magic 100 number.”

“I believe that now we are inside a five-year window where we will make Type 1 Diabetes much much easier to deal with,” Scott says. “I’m hearing good things about islet cell transplants, for example.”

Being a father and husband is also part of Scott’s hectic schedule.

“Humans (myself included) can be very lazy. I want them to build up their reservoirs of self-esteem and “I can do it” so they don’t accept the defaults”

Maybe because of the need to focus so carefully on his health, he’s an advocate of mindfulness, something he’s trying to teach his children.

“When I was younger I didn’t know the term ‘mindfulness’ so I said “don’t live your life by default.”

I’m doing my best to teach my kids this, hopefully by example. Yes there are things they can’t change about themselves, but the one thing they can change (or try) is how they think and how they act. I catch them saying things like “I’m not good at math.” They have tapes that are already starting to run in their little heads that feed them negativity and inaction. The defaults are just doing nothing. Humans (myself included) can be very lazy. I want them to build up their reservoirs of self-esteem and “I can do it” so they don’t accept the defaults.”

Meanwhile, Scott continues to look for ways to hack his health through tech.

“Most people give very little thought to advances in medicine beyond the never-ending search for the cure for the common cold,” he wrote. “But wireless technology promises to free people with medical conditions most of us never have to deal with…. from the ropes holding their lives back.”

https://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.png00Sarah Wilsonhttps://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.pngSarah Wilson2017-06-23 08:35:062017-06-23 15:12:05Microsoft's Cybernetic Diabetic On How Tech Can Help End Type 1

It seems wrong, of course, to set “healthy” and “human” in opposition to each other, but chronic illness makes you look at the world in weird ways.

With diabetes, you might expect to find a positive relationship between good care and happiness–and to some extent there is–but at the same time, it isn’t so simple. Sometimes, taking care of yourself is mentally taxing, and comes with certain costs.

To tell you what I mean, I’ll have to tell you about having Type 1. The disease is a sinister thing that creeps in to alter every move you make, no matter how mundane. You wake up…

Actually, halt right there: it matters when you wake up, because the cocktail of hormones that your body releases in the morning messes with your blood sugar considerably. Sleep does crazy stuff to the endocrine system, so this becomes the first of many daily choices in which diabetes leans over your shoulder and breathes heavily in your ear. “When should I wake up?”

If your sleep schedule becomes irregular, your blood sugar can behave like a crazed dolphin, diving and leaping, diving and leaping. You must acknowledge this every time you want go out at night with your friends, watch a late sports game, or stay up with the brother that you don’t get to see enough.

In many cases, what the Ideal Diabetic wants to do clashes with what your human self would like to do.

Each time you consider your options, you’re excruciatingly aware of what an ideal diabetic would do. They would create a strict sleep schedule and stick to it. You’re so aware of that lurking persona that it becomes a full-on character: The Ideal Diabetic, or TID. In many cases, what this character wants to do clashes with what your human self would like to do.

Keeping this tension in mind, let’s continue our tour of a diabetic’s day. When it’s time for breakfast, stay vigilant: too many carbs will make your blood sugar scrape the sky, and you’ll feel sick. It can take hours and hours to pull yourself back down. This will damage your focus and productivity. (The Ideal Diabetic probably wouldn’t eat carbs in the morning.) You must push through it.

Say your job on this particular day consists of writing an article. This task (before, during, and after completion) will affect your biochemistry–perhaps dramatically. (My blood sugar is rising as I write this, probably as a response to the mild anxiety and excitement of writing.) You can never fully enter “the zone” and concentrate 100% on writing, because you must pay attention to your illness.

If you want a beer when you come home, have it, but keep a close eye on your sugar level. The diabetic body reacts strangely to alcohol: your blood glucose rises, crests (this can be nauseating); and crashes (this can be dangerous: The Ideal Diabetic wouldn’t drink).

Quotidian choices provoke a flurry of mental activity. Say you want to take a spontaneous weekend hiking trip. This is difficult, and your brain scrambles, “Can I do this? Do I have sugar handy? Will my companions know what to do if something goes wrong? How far will we stray from the nearest hospital?” The Ideal Diabetic would have planned the trip ahead of time.

Carry all of this knowledge with you. Stay up late to chat with a friend, but you’ll relinquish control of your blood sugar. Have a beer, but you’ll suffer doubly. Go on a spontaneous hike, but you could be chugging sprite and heading back towards the car after half an hour.

You see where I’m going with this. Diabetes–and I assume it has this in common with other chronic illnesses–makes you live inside a mandatory pleasure-pain calculus.

Here’s the problem: being the Ideal Diabetic becomes dehumanizing after a while. Vigilantly policing your disease allows it, in some small sense, to rule you. Each decision you make in favor of TID, even if you hardly notice it after a while, takes a small toll. Eventually those decisions conglomerate into something fairly heavy that you carry around with you.

Spontaneity, flexibility, and indulgence in small daily pleasures: all of these things contribute to feeling human. The Ideal Diabetic would have to curtail these elements of his behavior, and so, I’d contend, he wouldn’t be, in the fullest sense, human.

Spontaneity, flexibility, and indulgence in small daily pleasures: all of these things contribute to feeling human.

So again, the problem might be stated this way: do you want to feel healthy, or feel human?

It might be frivolous to try extracting a lesson from all this, but any order, even artificial order, stretched over experience, makes it easier to wake up each day and do the same stuff. With this in mind, what I’ve decided to believe is that self-care ought to privilege the self, and not the disease.

It seems obvious that becoming The Ideal Diabetic wouldn’t be worth it. Planning your days rigorously and keeping a hawkish eye on your bloods sugar might allow you to stash away a few more years of life (who knows?), but wouldn’t that life be a little more sterile, a little more defined by illness?

Perhaps it’s good to remain a little anxious–I’m not trying to argue for any kind of lax posture toward the disease–but that anxiety should remain a tool, a whetstone for your medical vigilance, not something that motivates you. Staying up late shouldn’t provoke undue anxiety, and having a beer with friends shouldn’t scramble your brains with guilt.

I try to tell myself that it’s okay to compromise. It’s okay to take a hike, eat a big bowl of spaghetti, or play basketball for three hours, as long as you don’t forget your diabetes completely.

Maybe I’m wrong. Maybe it’s better to make everything secondary to one’s self-care, and haggle for those extra years. I’m not sure.

What I’m sure about is this: there’s a psychological element in one’s struggle with a chronic illness, and sometimes the brain needs to rest. It’s better to avoid injecting every decision–about what you eat, when you wake up, where you go–with a sense of moral crisis. You can never pretend you don’t live inside the pleasure-pain calculus, but you can put down the calculator and try to enjoy yourself.

Jensens have a hard time connecting to people. I talk to my dad maybe twice a year, and it’s not because I don’t love him. We just don’t talk. We’re taciturn Norwegians who float on our own lonely river until the ice swallows us.

My son Henry’s like that. He has a hard time looking people in the eye. Conversations with him are either clipped and abrupt or derail into animal facts or Batman trivia. My wife and I joke that he’s probably about 1% autistic. It’s like a party garnish.

Free hugs.

Henry was diagnosed with type 1 diabetes at the age of five. After three nights of constant pissing and a first-time-ever request to stay home from school, we took him to a nurse practitioner who was also a family friend.

It didn’t take long before we were off to the hospital where our new world was mapped out for us, one insulin shot at a time.

Type 1 diabetes is isolating. It makes the simplest things hard. When Henry eats lunch at school, he can’t just sit down with his friends. He needs to go wash his hands, prick his finger, test his blood, and give himself the appropriate amount of insulin. By the time he’s done, most of his friends–the ravenous, peanut-butter crusted wolves that they are –have choked down their lunch and are off to the playground.

When it’s somebody’s birthday, he can’t just eat the Funfetti cupcake. He needs to know how many carbs it is. A second slice of pizza? Hold on, more insulin. Blood sugar drops during phys ed? He needs to sit out for a bit and eat some Smarties. Sorry, team.

So for a child –a Jensen–already somewhat at odds with the world to have an additional thing pushing them away is hard.

I’m not saying that his friends ostracize him for having diabetes. They don’t. They’re universally supportive and think he’s a pretty cool guy who draws a mighty fine Batman. It’s more that he’s constantly being silently reminded by his disease that he’s not like them, that he can’t live in the same unencumbered way.

This kid makes diabetes look cool.

That sucks for anyone, but it sucks worse for a nine year old boy.

He was diagnosed in 2013. We slowly acclimated to the new reality of blood and math, of taking a day off school and a ferry and a two hour drive to see his endocrinologist every few months. Always knowing that because of where we live – a tiny island in a big ocean – that any mistakes, any emergencies, would mean Henry in a helicopter, airlifted to the big city hospital. But we didn’t make any mistakes. We didn’t have any emergencies. We learned, and we did our best. Time went by.

A friend of my wife’s called her in a panic. She knew a woman whose son Angus had just been diagnosed with type 1. They too were in a rural area, with no family history of the disease and no idea what to do. Their son was panicking every time a lancet or a needle came close to him.

Henry made him a little Instagram video. “Hi, Angus. My name is Henry.” He showed him how he tests his blood sugar, calmly and patiently. A drop of crimson blood welled up on his finger. “Now you do it.”

This was unexpected. We’d been using my wife’s Instagram as a way to share the videos, but we weren’t shooting for YouTube viral monetization of his childhood. We asked Henry if he was OK with other people seeing his videos.

He was.

They did. Other people started getting in touch, with newly diagnosed kids of their own. Henry made them videos. He demonstrated blood sugar checks. He told jokes. He did dances. And he told them that everything was going to be OK.

Henry made videos for kids in New York, in Canada, in California. And eventually we started working with a nonprofit (beyondtype1.org) that let him make videos for everyone in the world. Nick Jonas (formerly of the Jonas Brothers) is on the board. He has type 1 diabetes, one of the most high-profile diabetics in the world. Nick played a charity basketball game at the Barclays Center in New York earlier in the year.

Sweaty, exhausted, the only person Nick wanted to see after the game was Henry.

Henry’s video played on the Jumbotron during the game. It’s played on the NASDAQ billboard in Times Square. Kids all over the world know who Henry is (and want to know where he gets his clothes).

Last year Carter Clark came to visit. She’s a young type 1 diabetic who travels the world–she was fresh back to the states from Panama. She regaled Henry with stories of hacking through jungles, surmounting peaks surrounded by monkeys. He gets a postcard from her every few months, from Iceland or New Orleans or somewhere else far-flung.

He’s visited people in the wild Canadian mountains and on the shores of Montauk. Eaten at high-end restaurants where the chefs come out and talk about his meal. Been backstage at concerts and filmed, running in the sand, for television commercials.

An internet star.

None of this would have happened without Henry’s type 1 diagnosis.

As I write this, Henry is on his way back from Vancouver. He just filmed a batch of little videos with Victor Garber from the CW’s Legends of Tomorrow, another type 1 diabetic. He plays the DC hero Firestorm (or at least half of him. It’s complicated. Wikipedia it). How cool is that for my boy to stand next to an actor who he’s seen as one of his superheroes on TV?

I’d do anything to take the burden of diabetes from my son. I pass out typing the word “needle” and close my eyes when I watch The Walking Dead but I’d gladly take his disease on myself. But seeing him like this, seeing him forming these connections with unlikely people all over the world, makes me think that maybe there’s something growing deeper inside him, pushing him outwards on his own terms.

Folks is an online magazine dedicated to telling the stories of remarkable people who refuse to be defined by their health issues. By sharing the experiences of these individuals, we hope to change people’s notions about what it means to be ‘normal’.

Editorially independent, Folks is sponsored and published by PillPack. Part of our mission at PillPack is to create healthcare experiences that empower people. We don’t believe people are defined by their conditions. We pay our contributors, and we don’t sell advertising.